Me, my bladder and UTI

Disclaimer: I am not medically trained and all information in this post has been gathered from various sources shown listed below or my own personal experiences. This post also touches on mental health so if you find that triggering please don’t read on.

Picture this: you are going about your everyday business. Life is completely normal. You find yourself needing to go to the loo so, you pop yourself off to the toilet, sit down and it hits. There’s a slight burning sensation and the feeling that maybe you didn’t even need the toilet that much at all. Sound familiar? That is because 1 in 3 women suffer from a water infection/ UTI in their lifetime. But did you know that a further 20-30% of these infections will reoccur within six months? No? Then let’s talk. 

I remember my first infection. After being intimate with my first boyfriend (one of the many reasons to regret that relationship but I digress) I remember that burning sensation – the type that I was describing before. It was new to me so, a few cystitis sachets later and I thought I was cured. Little did I know that would be the start of a huge dark cloud that would take over my life for years to come. 

Fast forward a few years and I had ditched the boyfriend and went to University and was ready to live my best life. Naturally, university is full of drinking and social interactions. Well, let’s just say after each one of these more intimate “social interactions” came another trip to a walk-in centre after spending the morning stuck to a toilet trying to pass water as quick as I could drink it. A three-day course of antibiotics and off I went on my merry way, until the next month. And so the pattern continued.

Walk-in centres became my home away from home. 4 hours wait? Not a problem when you know the three-day course handed out at the end of it is going to take all your problems away for a short while. Plus, I had Netflix on my phone and some earphones so why complain? Although my mam (who I dragged with me every time) might disagree. 

Then I met Kane. I sharp realised I couldn’t be in a relationship and battle this ongoing issue at the same time so I decided to get answers. After undergoing invasive procedures including a cystoscopy and then an ultrasound I was left with no answers and a repeat prescription of trimethoprim to be taken as “prophylaxis as required”. While this kept me going for another year and life seemed normal again, my pesky bugs had gotten to know all about this trimethoprim game. I soon became resistant and trimethoprim was no longer an option to prevent or treat my infections.

Over the years I decided to reduce my risk of getting infections by giving up baths, giving up wearing “risky underwear” (strictly cotton comfies only over here thanks *eyeroll*), and even giving up acidic drinks such as pop and even alcohol. But one thing I refuse to give up is my relationship. 

Needless to say my infections persisted and increased to where we are today. 2020 was a year full of doctors appointments and handing in water samples followed by very little answers and little help from various GPS. I’ve had an infection every month since August 2020 and at least four since December 2020. In between these “infections” milder versions of the symptoms are constant. These symptoms include: burning, urgency, pressure in the lower abdomen, severe bloating and the constant feeling that I have not emptied my bladder enough. It affects my relationships, my ability to go to certain places, my mental health and my general quality of life to the point that on December 25th, in the middle of a flare-up, I asked myself if there was any point in sticking around anymore?

So, you may ask why am I telling you all of this? For sympathy? No. I’m telling you this because I want to feel heard and I want to see change. I had an appointment with a specialist today [Thursday 4th February], which prompted me to write this post. I had waited six months for this urologist appointment – a beacon of hope in a miserable dark place. He was an hour late calling me and the call lasted six minutes in total as he rushed me off the phone. He did not allow me to chat through my history or offer any discussions of my latest ultrasound results – which had actually shown swelling on one of my kidneys. And while I’d love to say that this is the first instance in which I have been let down by doctors and GPS, that couldn’t be further from the truth.

The reality? I believe I have an embedded infection that is recognised by a range of private specialists so, why and how can doctors be so hesitant to the idea on the NHS? And even if they don’t believe in it, how can they neglect people crying out for help who’s everyday life is consumed by pain and heavy negative feelings?!

Most of all, what I want you to know is that reoccurring UTIs/water infections/cystitis is not normal. While I’m still waiting for a diagnosis and proper answers, I don’t want any more women to go down the same path that I have. If you are having reoccurring infections, please seek immediate help from your GP and take a look at some of my links below. If this post prevents one person from going through the years of pain and depression that I have endured due to this stupid infection then at least I will have done one thing right. 

I apologise for the heaviness of this post but hope that, if nothing else, you found it informative and helpful for you or any friends or family that are going through something similar. And please remember a three-day course is not enough to get rid of an infection and cranberry juice is certainly not your best friend so leave that stuff on the shelves. 

I hope you’re all surviving lockdown and hopefully next time I can deliver a post based on all the amazing experiences that await us after this pandemic. Please drop any questions or comments below. Till next time xox

Sources & Helpful Websites:

Cystitis Unmasked: Amazon.co.uk: James Malone-Lee: 9781910079638: Books

Urinary Tract Infection(UTI): Symptoms, Diagnosis & Treatment – Urology Care Foundation (urologyhealth.org)

Why Your UTI Test May Be Negative Even If You Have Symptoms (liveutifree.com)

UTI test used by GPs gives wrong results in at least a fifth of cases, study claims | Medical research | The Guardian

‘In pain all the time’: will there ever be a cure for chronic, life-changing UTIs? | Health | The Guardian

What is chronic UTI? – CUTIC

UTI Antibiotics: Treatment for urinary tract infection (liveutifree.com)

Chronic UTI Info – Chronic UTI Info

Embedded/Chronic UTI Support Group on Facebook

9 thoughts on “Me, my bladder and UTI

  1. I went through this about 7 years ago, several courses of trimethroprin and a urology referral to be told mine was due to menopause and to avoid perfumed soaps and Bath gel/foam. Feel for you xx

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    1. It’s the worst feeling. Just like you’re a lost cause! I’ve had blood tests in case it was a lack of oestrogen, which is usually the reason it’s common after menopause, but no answers there either! Hopefully I’ll get some soon!xxx

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    2. This post had made my cry Alex as I feel so much for you and what you’re having to endure. We’ve chatted before and you know I had a very similar experience and at its worst the feelings of helplessness and pain are just horrendous. Take comfort your not alone and it will get better and keep on at those doctors to get proper treatments. There is light at the end of the tunnel and you will get better x

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      1. Aw Margie I’m crying now😂. I just can’t believe how common it is and how little answers there are out there! Hopefully I’m closer to the end of that tunnel than I think💖

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  2. Alex so sorry to hear your having such an awful time, it’s a nightmare when you know something is wrong but don’t get the right answers/diagnosis.
    I’m guessing you’ve had multiple urine samples sent, do they show repeated infections? Also have you looked at bladder pain syndrome?

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    1. They used to always come back positive till about this year which is horrendous because the symptoms are all there so you feel like a liar. I’ve looked urethral syndrome which is what the urologist indicated I have but I just really believe it’s an embedded infection so hope someone believes in me soon!x

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  3. Alex I had no idea what you have been through and are still going through. Your words about Christmas Day really hit hard and hope you never feel like that again. Sending lots of love and hope you find the diagnosis you need sooner rather than later 💗

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